And how I told 500+ students at Agahozo-Shalom Youth Village
After a long 10 days, I went back to the hospital in Kigali for the results. When they brought me to a back room in the pathology department, I was greeted by the Rwandan pathologist and another Human Resources for Health (HRH) member who I hadn’t met before. They explained that the results were inconclusive but suggestive of malignancy (cancer) and they wanted to send the leftover sample away for additional testing.
I was expecting a diagnosis but instead I received, ‘we think it’s cancer, but we’re still not quite sure yet.’ All I wanted was answers and what they gave me felt incredibly uncertain and vague. I agreed to the additional testing but I knew at that moment that I’d have to leave Rwanda. Even if they came back and said the testing was clear, I’d never trust it. By the end of the week, they said, they’d have the new results. So, I did the only thing that I could do. I went back to Agahozo-Shalom Youth Village (ASYV) and continued on like normal.
Normal, except I told my parents to prepare for an early stage breast cancer diagnosis and started telling staff that I probably have cancer and needed to leave. I made travel arrangements, trained a staff person to take over my responsibilities and brainstormed with staff how to tell the kids. All in just a couple days.
The kids at ASYV have already faced more trauma than anyone should ever have to. How would I tell them that I (probably) have cancer and have to leave 6 months early? How would I explain the difference in outcomes between Rwanda and the US and that it is not necessarily a death sentence for me? How would I comfort them? How would I do all of this with a significant language barrier? These questions plagued me the most. I spent hours and hours thinking over these things, trying to protect the kids that I’ve grown to care about deeply all while honoring transparency. They’ve shared their trauma with me, there was no way I was going to hide this.
There were over 500 kids at ASYV, aged 14 to 21 years old, and I specifically supported a family of 18 girls, as a ‘cousin,’ alongside our ‘big sis’ and ‘mama.’ I made connections with many kids beyond my family though as I taught English, mentored, and interacted with them in other capacities.
The staff and I decided that helping to educate my family in the safety of our family home would be the best way to break the news. This way they could learn and ask as many questions as they want, all while feeling their emotions in a safe space with their social worker present. I created a PowerPoint presentation, briefly explaining that I found a lump and the doctors think it’s breast cancer, what that means and possible treatment options. I left out chemotherapy mostly because I was naive and thought I wouldn’t need it. The size of the lump made me believe it was early stage and I’d get ‘lucky’ with just surgery and radiation. I also explained that it can affect young women and how to perform a self-exam, so that hopefully they will always check themselves in the future. The more I seemed in control, the more safe they would feel. Or at least that’s what I told myself.
I told my mama, big sis, and other staff members first to give them time to process and support the kids. I took a day trip to Kigali for the additional results on Friday, which did not provide any more clarity. I just kept hearing ‘suggestive of malignancy,’ which really is an indication of the diagnostic capabilities in Rwanda.
Still without a diagnosis, I had to start telling the kids that I probably have breast cancer. My first task was getting my girls together for an impromptu Saturday afternoon family time, taking them away from other activities including church. One of my girls never missed church and without giving away what was happening, I spent a long time trying to convince her to attend family time as I knew she’d regret not being there. Luckily, she saw how important it was and eventually decided to attend.
It was after lunch and I was anxious as to how this would go. I had already used the PowerPoint to tell my interns as well as some of the older students I was particularly close with, so I knew it was relatively well-received (as much as it could be). I was grateful to have the other Cousins support the kids after I told them, as I had to make the rounds.
It was finally time to tell my girls. My mama, big sis, the social worker and all 18 girls were sitting in a circle in our family home. I started with the powerpoint, leaving time for my big sis to translate, as they needed to hear this in Kinyarwanda. They were quiet and intently listening. At first, there was little reaction. I think they were simply processing. At the end, I asked if they had any questions and there were a few. When I mentioned I had to go back home for treatment, one of the last questions they asked was when. “Tomorrow,” I shared with sadness.
That’s when the emotions started flooding. Rwandans have generational trauma that I’ll never pretend to understand, but sometimes they can express their feelings in very visceral ways. This means that some of my girls were sobbing and hyperventilating, flailing their arms around, throwing themselves onto their beds and more. It was intense. I knew it would be. I couldn’t comfort them in the same way I normally would because of the language barrier and I knew they needed to let it out.
Our mama, big sis and the social worker were all there making sure they were safe. I felt my heart breaking. I felt utterly helpless. I kept wishing I could do more. Just when I needed it most, the tiniest girl in our family who was sitting across from me just looked at me calmly, gave me a little smirk and winked. I got up and wrapped her in my arms and gave her a big squeeze. I knew she was okay and I knew she’d help the other girls be okay too.
When the emotions lessened slightly, I told the girls I needed to go pack but that I’d come back in just a couple of hours to spend the rest of the day and night with them. I told them we’d have a sleepover in the family house, bring all the mattresses out in the common room and listen to music/dance all night. This was the least I could do to honor our last night together. They continued to process their emotions but they also decided to make that night a party. Excitement grew and they told me not to come back to the house until they came to get me.
Just a few hours later, I knew word would spread to the other students. My girls finally came to get me and they threw a party for me. They found a way to get some of their favorite foods and juice, asked some of the boys to be our photographers for the night, and got all dressed up! We spent the evening singing, dancing, eating, and just loving each other. We brought all the mattresses out and when we finally got tired enough, we fell asleep.
The next morning was an absolute whirlwind. Word had definitely gotten around so our family home was swarmed with all the other students who wanted to say goodbye to me. I hate being the center of attention so this was overwhelming for me in a variety of ways, but it was so incredibly sweet. I was so focused on showing these kids as much love as I possibly could before I left and making sure they’d get extra love from the other cousins and staff once I left.
By noon I had left the Village and was on my way to Kigali for a night before my flight the next day. It all happened so quickly and the first time I got truly emotional was at the airport going through security, because I really didn’t want to leave Rwanda or ASYV. But on June 27th, 2016, 6 months earlier than anticipated, I left the country with a probable cancer diagnosis.